Exploring breast cancer diagnosis and treatment experience among a sample of South African women who access primary health care

Despite the known impact of a cancer diagnosis and related treatments on quality of life, and the complexity of patient journeys in low-resource settings, there has been little published research into the relevant issues faced by South African women living with breast cancer. In this study, we aimed to understand the experiences of breast cancer diagnosis and treatment among a sample of South African women who access primary health care. A convenience sample of 12 women between the ages of 48 and 66 years attending a primary health care facility took part in our study. Women undergoing breast cancer treatment were invited to take part in face-to-face interviews. The interviews were semi-structured and guided by an interview schedule. Interviews were analysed thematically using ATLAS.ti v 8 computer software. We identified three important themes that explained how women experience diagnosis and treatment, namely, (1) reactions to the diagnosis experience, (2) the importance of faith, and (3) the value in having a sense of agency. Women’s initial reaction to their cancer diagnosis was one of shock and disbelief. Despite these reactions, faith and agency played an important role in how women in this study made sense of their illness experience and how they coped. Our findings demonstrate that women’s experiences of breast cancer diagnosis and treatment were accompanied by some psychological distress for which they need support. Furthermore, supporting women to make positive choices about coping and valuing the role of religion when appropriate should form part of any therapeutic engagement, medical or otherwise.</p

Scaling early child development: what are the barriers and enablers?

The Sustainable Development Goals, Global Strategy for Women's, Children's and Adolescents' Health (2016-2030) and Nurturing Care Framework all include targets to ensure children thrive However, many projects to support early childhood development (ECD) do not 'scale well' and leave large numbers of children unreached. This paper is the fifth in a series examining effective scaling of ECD programmes. This qualitative study explored experiences of scaling-up among purposively recruited implementers of ECD projects in low- and middle-income countries. Participants were sampled, by means of snowball sampling, from existing networks notably through Saving Brains®, Grand Challenges Canada®. Findings of a recent literature review on scaling-up frameworks, by the WHO, informed the development of a semistructured interview schedule. All interviews were conducted in English, via Skype, audio recorded and transcribed verbatim. Interviews were analysed using framework analysis. Framework analysis identified six major themes based on a standard programme cycle: planning and strategic choices, project design, human resources, financing and resource mobilisation, monitoring and evaluation, and leadership and partnerships. Key informants also identified an overarching theme regarding what scaling-up means. Stakeholders have not found existing literature and available frameworks helpful in guiding them to successful scale-up. Our research suggests that rather than proposing yet more theoretical guidelines or frameworks, it would be better to support stakeholders in developing organisational leadership capacity and partnership strategies to enable them to effectively apply a practical programme cycle or systematic process in their own contexts

Barriers to and facilitators of paediatric adherence to antiretroviral therapy (ART) amongst children younger than five years in rural South Africa

Thesis (PhD)--Stellenbosch University, 2015ENGLISH ABSTRACT : In the context of the limited availability of antiretroviral drugs for young children and the emergence of drug resistance, excellent adherence is required to achieve an undetectable viral load (VL) and an elevated CD4 count. However, characteristics of the caregiver, child, regimen, clinic and social context affect clinic attendance and medication-taking, both of which constitute adherent behaviour. In this thesis, through the lens of Bronfenbrenner’s Ecological Systems Theory (EST), I explored the barriers to and facilitators of ART administration to children younger than five years in a rural area of South Africa with a high prevalence of HIV. The research was conducted in two phases. Phase 1 included nine interviews and three focus groups to determine how doctors, nurses, counsellors, traditional healers and caregivers understood the barriers and facilitators to ART adherence among children residing in rural South Africa. The data were transcribed, translated into English from isiZulu where necessary, and coded using ATLAS.ti version 7. At the level of the microsystem, the unpalatability of medication and large volumes of medication were problematic for young children. The characteristics of the caregivers that contribute to poor adherence were absent mothers, grandmothers as caregivers and denial of HIV amongst fathers. At the level of the mesosystem, language barriers and inconsistent attendance of caregivers to monthly clinic visits were factors affecting adherence. At the level of the exosystem, the nature of adherence counselling and training of counsellors were the most problematic features influencing adherence. At the level of the macrosystem, the effects of food insecurity and the controversy surrounding the use of traditional medicines were most salient. I concluded Phase 1 of the thesis by recommending increased supervision and regular training amongst lay adherence counsellors, as well as regular monitoring of the persons attending the clinic on the child’s behalf. In Phase 2, I purposively recruited 33 caregiver-child dyads from the Hlabisa HIV Treatment and Care Programme database. Children were divided into three groups based on their VL at the time of recruitment. Children with a VL ≥ 400cps/ml were grouped as unsuppressed (n=11); children with a VL ≤400 cps/ml were grouped as suppressed (n=12); and children with no VL data were grouped as newly-initiated (n=10). I observed caregiver-child dyads at their monthly adherence counselling visit to document information they received from adherence counsellors. I then visited caregiver-child dyads at their households to document, by means of video-recording, how treatment was administered to the child. Observational notes and video-recordings were entered into ATLAS.ti v 7 and analysed thematically. On average counselling sessions lasted 8.1 minutes (range 2 - 18). Little behaviour change counselling was conducted, even in instances where children were doing poorly on treatment. Thematic video analysis indicated five key areas of caregiver practices that may contribute to poor outcomes. These were context-related, medication-related, caregiver-related, and child-related factors and interactions between caregiver and child. Although the majority of children in this sample took their medicine successfully, the way in which medications were prepared and administered by their caregivers was problematic. I concluded Phase 2 of the thesis by recommending that with emerging drug resistance, efforts are needed to carefully monitor caregiver knowledge of treatment administration by counsellors during monthly clinic visits.AFRIKAANSE OPSOMMING : Binne die konteks van die beperkte beskikbaarheid van antiretrovirale behandeling vir jong kinders en die verskynsel van weerstand teen middele is uitstekende navolging nodig om by ’n onwaarneembare virale lading (VL) en ’n verhoogde CD4-telling uit te kom. Die kenmerke van die versorger, kind, regimen, kliniek en die sosiale konteks affekteer egter kliniekbywoning en die neem van medikasie, wat albei navolgingsmaatstawwe is. Ek het in hierdie studie die struikelblokke en fasiliteerders tot ARV-behandeling van kinders jonger as vyf jaar in die landelike streke van Suid-Afrika verken aan die hand van Bronfenbrenner se Ekologiese Stelselteorie (EST). Die navorsing is in twee fases gedoen. Fase 1 het nege onderhoude en drie fokusgroepbesprekings ingesluit ten einde vas te stel hoe dokters, verpleegsters, beraders, tradisionele genesers en versorgers die struikelblokke en fasiliteerders tot ARV-navolging sien. Die data is getranskribeer en in isiZulu vertaal waar nodig, en gekodeer met behulp van ATLAS.ti weergawe 7. Op die vlak van die mikrosisteem was die onsmaaklikheid van medikasie en die groot hoeveelhede medikasie vir jong kinders problematies. Die kenmerke van versorgers wat bydra tot swak navolging is afwesige moeders, oumas as versorgers en ontkenning van MIV onder vaders. Op die vlak van die mesosisteem is taalhindernisse en ongereelde kliniekbywoning geidentifiseer as faktore wat navolging beïnvloed. Op die vlak van die eksosisteem is die aard van navolgingsberading en die opleiding van beraders uitgelig as die mees problematiese faktore wat navolging beïnvloed. Op die vlak van die makrosisteem is die gevolge van voedselonsekerheid en die kontroversie rondom die gebruik van tradisionele behandelings geopenbaar as die mees opvallend. Fase 1 van die tesis sluit af met ’n aanbeveling dat daar meer toesig en gereelde opleiding vir die leke navolgingsberaders moet wees, sowel as gereelde monitering van die persone wat die kliniek bywoon namens die kind. Gedurende Fase 2 het ek 33 versorger-kind-pare doelgerig gewerf uit die Hlabisa MIV Behandelings- en Sorgprogram se databasis. Kinders is verdeel in drie groepe gebaseer op hulle VL ten tyde van werwing. Kinders met ’n VL ≥ 400kps/ml is gegroepeer as nie-onderdruk (n=11); kinders met ’n VL ≤400kps/ml is gegroepeer as onderdruk (n=12); en kinders met geen VL data is gegroepeer as nuut-geinisieer (n=10). Ek het die versorger-kind-pare waargeneem tydens hulle maandelikse navolgingsberadingsbesoek om te dokumenteer watter inligting hulle van navolgingsberaders ontvang. Ek het daarna die versorger-kind-pare in hulle huishoudings besoek om met behulp van video-opname te dokumenteer hoe behandeling toegedien is. Waarnemingsnotas en video-opnames is in ATLAS.ti v 7 ingevoer en tematies geanaliseer. Beradingsessies het gemiddeld 8.1 minute (range 2 - 18) geduur. Min berading oor gedragsverandering het plaasgevind, selfs in gevalle waar kinders sleg gevaar het op die behandeling. Die tematiese video-analise toon vyf sleutelareas binne versorgerpraktyke wat moontlik bydra tot swak uitkomste. Hierdie areas is die konteksverwante-, medikasieverwante-, versorgerverwante- en kindverwante faktore en die interaksies tussen versorger en kind. Alhoewel die meerderheid van kinders in hierdie monster hulle medikasie suksesvol geneem het, was die manier waarop medikasies deur versorgers voorberei en toegedien is problematies. Fase 2 sluit af met die aanbeveling dat beraders in die lig van stygende medikasieweerstand moeite moet doen om versorgers se kennis van die toediening van behandeling te monitor

Balancing roles and blurring boundaries: Community health workers’ experiences of navigating the crossroads between personal and professional life in rural South Africa

CITATION: Laurenzi, C. A. et al. 2020. Balancing roles and blurring boundaries: Community health workers’ experiences of navigating the crossroads between personal and professional life in rural South Africa. Health & Social Care in the Community, 29(5):1249–1259. doi:10.1111/hsc.13153The original publication is available at https://onlinelibrary.wiley.com/journal/13652524As demand for health services grows, task-shifting to lay health workers has become an attractive solution to address shortages in human resources. Community health workers (CHWs), particularly in low-resource settings, play critical roles in promoting equitable healthcare among underserved populations. However, CHWs often shoulder additional burdens as members of the same communities in which they work. We examined the experiences of a group of CHWs called Mentor Mothers (MMs) working in a maternal and child health programme, navigating the crossroads between personal and professional life in the rural Eastern Cape, South Africa. Semi-structured qualitative interviews (n = 10) were conducted by an experienced isiXhosa research assistant, asking MMs questions about their experiences working in their own communities, and documenting benefits and challenges. Interviews were transcribed and translated into English and thematically coded. Emergent themes include balancing roles (positive, affirming aspects of the role) and blurring boundaries (challenges navigating between professional and personal obligations). While many MMs described empowering clients to seek care and drawing strength from being seen as a respected health worker, others spoke about difficulties in adequately addressing clients’ needs, and additional burdens they adopted in their personal lives related to the role. We discuss the implications of these findings, on an immediate level (equipping CHWs with self-care and boundary-setting skills), and an intermediate level (introducing opportunities for structured debriefings and emphasising supportive supervision). We also argue that, at a conceptual level, CHW programmes should provide avenues for professionalisation and invest more up-front in their workforce selection, training and support.https://onlinelibrary.wiley.com/doi/10.1111/hsc.13153Publishers versio